None of our patients is as smart as all of our patients

Following is an excerpt from a story I wrote that has just been published in Australian Doctor:

It’s not just doctors who are sharing stories on the Internet. In the US, a plethora of sites lets patients post observations on their disease progress and management, and search for similar people and post comments, ask questions, form relationships, etc. Sites in this area include Daily Strength (www.dailystrength.org), Caring.com (www.caring.com) and Trusera (www.trusera.com).

The one getting the most publicity at the moment is PatientsLikeMe (www.patientslikeme.com), which boasts as members thousands of people with diseases such as mood disorders, Parkinson’s disease, multiple sclerosis and amyotrophic lateral sclerosis. Founder David S Williams III says patients get more value from recording their health information when they share results with each another.

Williams says one of the most unexpected things that has happened on the site is the interaction springing from the comments members leave on each others’ profiles. “In many ways comments are not central to the site — forum and private messaging support more in-depth conversations.”But PatientsLikeMe has found that members read other people’s profiles to help them reach an informed person to ask advice and offer personally acquired knowledge to people who will benefit from it.

For patients who want to add a bit of expert advice to the mix, Organized Wisdom (www.organizedwisdom.com) offers a medical search service hand-crafted by ‘guides’ appointed by the site owners. The guides are a mixture of physicians and experienced web users. Sites such as DoublecheckMD (www.doublecheckmd.com) operate like consumer medicine information on steroids — they provide every possible adverse reaction, using natural language recognition to allow consumers to search medical texts and match symptoms with the drugs they’re on.

And of course no description of patient-centred Health 2.0 sites would be complete without mentioning doctor rating sites. One of the newest sites, Vitals.com (www.vitals.com), includes an algorithm extracted from physician peer reviews, while Xoova.com (www.xoova.com) offers a directory, ratings and online appointment bookings.

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One thought on “None of our patients is as smart as all of our patients

  1. Ray, on behalf of the team here, thanks so much for the mention of Trusera above. We’re gaining an increasing following in Australia and New Zealand, so thanks for helping us spread the word.

    I love your title. It really captures the ethos of what Trusera and many other health sites are achieving. In our case, I’d just make one suggestion: why just patients? Our take is that every consumer has an opportunity to tap into the head, the experience, the shared struggles we’re all having around health. If we did that, perhaps we’d be patients less often. Just a thought! Cheers from Seattle, USA.

    Jude O’Reilley (Product Guy, Trusera)

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